Interview with Rachel Kallem WhitmanMN: In the digital age, where there's such a large number of resources and wide variety of information available to the public, it's clear that there is a need for accurate information and a better understanding about mental health. What motivated you to share your story of living with bipolar disorder? RKW: Storytelling can take a variety of forms and until I started writing about my life with bipolar disorder, my relationship with my mind, body, and my ability to "fit" in this world was documented through symptoms. Through scars, severed relationships, substance abuse, hospital stays, and reckless behavior I documented my struggle; it was evidence of my battle with bipolar disorder. My losing battle. I started seriously writing about my experience with mental illness when I graduated from college and the main reason was survival. Writing empowered me to process my trauma, acknowledge and accept my mental illness, and to find my authentic identity in an existence that had once seemed overwhelmingly unpredictable and way too painful. Through personal essays and poems I started piecing together my own disability narrative for the first time and really finding myself - I am the strong woman in the center of this illness. Writing enabled me to shift my self image; I started perceiving myself less and less as being "sick" and "broken" and more and more as being capable in school, work, relationships, and in managing my illness. Writing is highly therapeutic and after years of putting myself on paper I realized that I was finally explaining those old scars, I was exploring the reasons behind my addictions, and I was finally speaking for myself. Instead of my account of bipolar disorder consisting of how many days I was inpatient, I owned my story, took responsibility for my illness, and I began to truly understand myself. Writing my story helped save my life and I decided to share my story in the hopes that it could help someone else. Maybe the telling of my own story can speak to someone who is struggling with their own scars. Maybe my story can provide solidarity with someone who shares a diagnosis. Ultimately I hope that reading my words will empower individuals struggling with mental illness to write down their own and in doing so nurture a language through which they can ask for help - because that is how you save a life. MN: You mention that writing helped you piece together your own disability narrative and really find yourself. During this process, did you discover aspects of yourself and pieces of your story that really surprised you? Things that you feel perhaps you may not have learned or explored if you hadn't begun writing your journey? RKW: I never thought of myself as a survivor. Before I began writing it seemed like my life was a jumbled collection of unpredictable and uncontrollable experiences that I simply struggled through. For the longest time I only invested in my negative self-talk; I was worthless, I would always be sick and dependent, I was unsuccessful, and I deserved to carry pain. And the stigma surrounding mental illness reinforced this negative self-image so much so that it truly felt like the only identity I could claim was being mentally ill. When I would look back on certain experiences in my life I never attributed positive outcomes to my own effort or strength, but rather that I had lucked my way through or someone had swooped in and saved me. I didn't see myself as being in control, someone who was able to define and improve her own life. I didn't survive, I struggled. But as I began to write more and more about my life experiences, my identity, my illness, and my accomplishments, I started authoring a narrative that was much more balanced and above all else honest. I realized that I wasn't a passive player in my own life; I made decisions and acted in ways that visibly and objectively made my life better. The more I wrote the more I realized that I am in control and when things get rough, as they inevitably do, I have the ability to center myself, treat myself well, and get back on track – because I've already done that many, many times over. Yes, my story covers struggle, illness, and survival, but the driving themes are truly my capacity for joy and my commitment to happiness. So, all that being said, I think what actually surprised me the most throughout this journey is the fact that other people want to hear my story and how well they personally relate - how none of us are completely alone when it comes to life with mental illness. MN: Readers being able to relate is such a key piece in the process of blogging one's story. What parts of your journey and your life with bipolar disorder do you find your readers seem to relate to most, based on their comments and feedback? Do any of these particularly surprise you? RKW: My blog is about my life - not just my life with bipolar disorder. I've designed my blog to be a space where I explore my history, how I process my experiences both past and present, a place where I can share intellectual ideas and express myself creatively, and above all else my blog is an outlet for my complete story. Initially I did plan to blog exclusively about my experiences living with mental illness, but as I read these selected scenes I saw that the "Rachel" on the page wasn't actually me - she didn't do me justice because her story was one-sided and felt forced. I realized that in order to bring authenticity to my story and preserve my integrity as a story teller and an advocate, I would have to share the whole story - the whole me. So what did I do next? I can tell you what I didn't do - I didn't start my blog! I actually waited almost two years before creating my Medium Page. The truth was, while I wanted to share a more complete version of myself, at that time I wasn't ready. I was still processing a lot in therapy, working through past issues, figuring out medication, and finding stability - and with my therapist's wisdom I realized that sharing raw memories, which would leave me feeling pretty vulnerable, would most likely just jeopardize my health. I needed to be more balanced, have a better handle on past trauma, communicate some things to my friends and family before publishing, and only after I felt safe - and ready - I could make the decision to share my writings. My therapist kept reminding me that this is MY story and I should never feel obligated to share anything that I'm not ready too - a much needed exercise in keeping healthy boundaries. During that two year waiting period I kept writing and accumulating pieces and after all was said and done when I decided to start posting I had a surplus of content to read through. And that actually instituted a great practice - don't post anything instantaneously! I try to sit on a piece for at least four days (unless it is topical) so I can re-read, revise, and have a bit more perspective before hitting "publish." This also helps with owning my narrative. But to get to your original question, I think my readers relate to my whole my story - not just my accounts on living with bipolar - which makes them more likely to read and keep reading. I write about my history of childhood trauma, my struggle with anorexia, my experiences with suicide and suicidal thoughts, pieces on self-harm, the role my amazing partner plays in my life, shout outs to my pets, reactions to news events like discussing my own rape in the context of society's abhorrent perpetuation of rape culture during rapist Brock Turner's trial, academic thoughts on the relationship between ableism and racism - you get the idea. This blog is truly a space for me, my whole self, as someone who survived a lot of trauma, who has a lot of love in her life, as someone who is a doctoral candidate eager to impact the world, as an experienced advocate, and as someone who embraces every facet of the writing process. I get feedback from people who relate to living with mental illness and the shared struggles of disordered eating and body dysmorphia. People comment about their sexual assaults and how this in conjunction with mental illness makes life really really challenging. And I posted a picture and a comment once about how much I love my dog and her role as my emotional support animal and I got a lot of love from people! I think people read my blog because I'm transparent - but again this is on my terms. When I do decide to post something my words are honest and authentic, but I'm always the one who makes the decision. When it comes to surprises - I get a LOT of feedback from professors in disability studies and professionals in the medical field. Several professors have responded to my posts with requests to use my blog as a teaching tool for coursework in related fields - especially in classes covering medical narratives, the diversity of the disability experience, and to capture a different voice in the ongoing mental illness conversation in the context of a pathology paradigm driven health care system. My decision to first start posting was to acknowledge the worth and truth of my own experiences and to help people who are struggling with similar issues. But I'm now seeing that there are other audiences who are interested in my account - particularly as a way to teach students who hope to work in disability and mental health fields. That is a really exciting and unexpected response! The fact that a professor at Columbia wants to use my posts in one of her classes, that is incredibly encouraging. I'd love to be able to impact the next generation of professionals and create a more person-centered, stigma free treatment space! Actually a professor even emailed me to say I should consider getting my master's in medical narrative which was such a compliment - however I'm graduating with my doctorate in December and I think that is enough school for me! MN: That's quite impressive! It sounds like you've had some incredible experiences since starting your blog, and that you've taken the time to develop your process to ensure that you stay true to yourself, while holding the readers interest and not having a negative impact on your health. You have been through a tremendous amount. What would you say is the most difficult topic or piece of your life that you have chosen to share on your blog? What type of feedback did you receive on sharing it? RKW: Writing about and publicly acknowledging my psychotic episodes was by far the hardest thing to share on my blog. I have been a very vocal mental health advocate for years and I was pretty open about living with bipolar disorder 1. I would speak at mental health and disability conferences, I serve on several committees for non-profits in human services, and I was accepted to a writing fellowship that focused on addressing the stigma surrounding mental illness. But the bipolar that I spoke about was actually just the "neat and tidy" version of my life with mental illness. Speaking about hypomania, mania, depression, and even suicidal ideation felt much easier to talk about than psychosis because I was using language and sharing experiences that people were more familiar with. While not everyone understands the severity and reality of depression, people get the general idea. Politicians, celebrities, athletes, and other public figures have addressed their struggles with depression so the stories I share about my depressive episodes resonate. When it comes to sharing my experiences with hypomania and mania, while these manifestations of mental illness might not be part of our everyday lexicon, I feel like people digest these accounts with far less trepidation than the "scary" stories of being mentally ill. My hypomanic and manic episodes are characterized by unbridled exuberance, bottomless euphoria, and rampant grandiosity which typically results in some interesting misadventures. During these episodes I am the life of the party, I do drugs, I'm hyper sexual, I'm impulsive in every way, I don't eat or sleep, and I am a danger to myself - but I think in some ways it is easier for people to read about these experiences because I tend to write them through the lens of being manic - which means I'm having the time of my life. The darker stuff is there but it is sandwiched in between my relentless energy and my chaotic joy. And when it comes to writing about suicide, well, unfortunately very few people are a stranger to this subject. Again, people might not understand it, but we see it enough on the news, we read about it (and unfortunately sometimes romanticize it) in the biographies of celebrated authors and artists who took their own lives, and suicide is a tangible concept. We can "see" suicide because that person no longer exists. We will never know the full extent of their pain nor their thought process but we mourn them when they are gone. Obviously all of these struggles are challenging, but for me writing about my psychosis is by far the hardest! Psychosis is messy and alarming. The word psychosis" conjures up so many malignant stereotypes - we envision people who are violent, erratic, and dangerous. Psychotic people are a menace to our sane society. We demonize psychosis and dehumanize the people who suffer from it because it is hard to imagine that experience. It is too threatening and alien - so imagine how people living with it feel ! Psychosis is frightening but it is not because I might harm someone else, it is because there is the very real fear that I might harm myself - which is statistically true for the majority of people living with mental illness. Despite being such an ardent mental health advocate, I still feel ashamed and embarrassed at times about the fact that psychosis is part of my illness. It completely disrupts my life, it is scary to experience, it is utterly exhausting to treat due to the strain on my brain and body. Understandably it makes my friends and family worry, and it is very isolating. It is hard to talk about experiencing psychosis, to find the right words that people understand, and ultimately that was why I decided to write about my personal experiences. Psychosis is definitely an abnormal experience but we need to normalize sharing these symptoms and accompanied feelings because if we don't stigma enforces our silence. People might not seek treatment, and that can be life threatening for those living it. MN: Did you choose to write about your psychosis right away (upon starting your blog), or did it take you longer to decide to share this? What pulled you past the feelings of being ashamed and embarrassed to allow you to put this out on your blog? Have these feelings lessoned over time as you've written about psychosis? RKW: It took me quite a long while to decide to share some of my experiences with psychosis - in fact I'm really just starting to delve into that facet of my illness. I've been reluctant to post anything about my psychosis for such a long time because I sometimes feel ashamed and embarrassed but I'm also reticent because I'm not sure how sharing that experience can impact me down the line. Stigma is very real and it often leads to people making snap judgments that are usually pretty negative. I've been on the receiving end of this quite a few times in a variety of scenarios. For example I once had a panic attack in an airport and when I told a customer service representative that I needed help I was asked "why" and when I delivered my diagnosis the entire vibe and willingness to help changed. At a past job I ended up having to apply for medical leave and as soon as my diagnosis was slapped on paper my supervisor's behavior towards me was markedly different. So the prospect of telling people about the psychosis aspect of my bipolar seemed pretty terrifying. Every time I even considered telling people the next thought that popped into my head was "wow! I can't think of a better way to ostracize myself!" Honestly, if real life hadn't gotten in the way, I wonder if I'd had ever been public about my psychosis. I was determined to keep my psychosis a secret and that plan seemingly worked until my husband started traveling for work. His job requires him to travel a fair amount and when I'm left by myself I tend to become symptomatic rather quickly. I stay on my meds and I practice self-care but by its nature mental illness is unpredictable and divisive. When I am alone and my routine is disrupted slipping into insanity is a very real possibility - and this happens for a lot of people with mental illness. Without my husband around it is easier to get lost in my own thoughts, then caught up in my own anxiety, trapped in my delusions, and I'm prone to spiral into more severe symptoms. The battle to stay collected and sane is always pretty rough and it causes a lot of concern for my husband and my family because the only times I've attempted suicide have been when I'm psychotic. I lose my grip on reality and my psychosis insidiously rewrites my life and tells me to end it. And when I'm all alone with no sane person to redirect me and give me the right amount of pills and push for the right amount of sleep, I become so fearful, cracked, and exhausted that there is no choice, I should kill myself. And of course this is BAD! But my husband has to work, which means he has to travel. My parents, sisters, and I all live in different states. It is hard not having family nearby to help out. But my husband and I realized that we needed to make our own safety net because we can't afford any chances. After a lot of talking and honestly, a fair amount of convincing, I decided to tell some close friends about my psychosis and how they could help in a pinch. I can't stress how terrified I was to do this! The thought of letting people in, letting them see the sickest part of myself, it is still scary. I didn't want to lose friends! I didn't want to burden my friends! I didn't want them to see me like that. I don't want the world to know I'm like that. Ok - cue my therapist! With the suggestion of my therapist and help from my psychiatrist, my husband and I launched "Psychosis Supper." So what exactly is "Psychosis Supper"? In order to create a safe space to talk about my mental illness with close friends, my husband and I threw a pot luck. The name is silly but that's intentional - we don't want psychosis to be scary. During our first "Psychosis Supper" my friends and I gathered around our table, we ate food, we chatted, and we all talked about mental illness. It was hard at first, even with such amazing friends at my table, but I was encouraged because they genuinely wanted to learn about what I go through so they would be able to help if I need it. During dessert my husband and I went through a Google Doc that we later shared with our friends that lists things like medication guidelines, contact info, things that calm me down like watching my favorite movie, a list of foods I'll eat if I become symptomatic (i.e. I will only eat packaged food when I start cycling), instructions on how to take care of our pets if that is necessary, etc. Creating this document and sharing it was one of the most uncomfortable things I've ever done and to be honest I still feel relatively vulnerable, but I know it is necessary. I have to keep myself safe. I'm lucky to have so much love in my life and now I just need to accept the fact that there are some wonderful people out there who really want to help me. Writing about my psychosis has given me more language and a bit more courage when it comes to having conversations like the ones held over "Psychosis Supper" but I'm not gonna lie, it is still hard to own that piece of my illness. Luckily I have a lot of phenomenal people to help me with it. MN: It must have taken a tremendous amount of courage to discuss psychosis with friends, to throw the Psychosis Supper, and to face the fear you felt discussing this part of your mental health, which you'd chosen to keep so private previously. In fact, it must have taken courage just to start sharing your journey and your life through your blog, even without including your psychosis. What key pieces of advice do you have for people who are thinking of blogging about their mental health experiences? Any personal tools/guidelines that you felt worked well and helped you through the experience? Anything that, in hindsight, you may do differently or adjust? RKW: Writing has always been a healthy way for me to process my feelings, rehearse how I'd talk about them, and it provides much needed structure so I can share my story with other people in a way that resonates. Over time I've grown from a writer who mostly writes for herself to one who publishes posts regularly – but, as we've discussed, this has been a process. I think the decision to share pieces about sensitive and personal topics like mental health shouldn't be taken lightly because mental health narratives are emotionally intricate, nuanced and complicated, and stigma is a very real prejudice in our society. Through my journey writing and publishing about my life with mental illness I've learned the following lessons that have enabled me to share my writing in a way that is emotionally safe. 1) Remember - you own your story! Never feel obligated to share anything. If and when you are ready to share your experiences with mental illness, you need to do it on your terms. If you lose control of that power sharing your work can become incredibly stressful and can jeopardize your own health. You need to prioritize your own self-care over a deadline. 2) I never publish anything in the heat of the moment. People can be impulsive and I think we all have said things we regret in an emotionally charged situation – and you can share things you later regret too. Publishing a piece that is a knee jerk reaction to some hot button issue can misrepresent how you actually feel and it is easy for that stuff to get misinterpreted. I think we've all tangoed with this - here is my personal example: I published something on my blog after a fiery conversation with a relative (not about them but as a response to the conversation) and after the dust settled I realized that my intense passion definitely skewed the content of the post. After I cooled down a bit, the post didn't reflect how I truly felt – it was the exaggerated "I'm aggravated" version. Now, as I've mentioned, unless it is topical, I always wait at least four days before I publish anything. I write it, re-read it, edit it, think about it, and then when I feel ready, I post it. 3) Since my writing mostly features my personal experiences with mental illness, psychosis, suicide, PTSD, sexual assault, etc. I have to be careful with what I share because it could impact future employment, my writing does not only include me but also my husband and my family so I need to be cognizant about how posting might impact them, and after I post something I have to brace myself for people asking me about it in every day life. The first time that happened I was taken aback – "woah – they are asking about my anorexia!" – but I open myself up to these conversations once I make these stories public. That wasn't a negative experience per se but it made me realize that questions like those might very well pop up so I should be careful. 4) Having a blog is empowering and I love being able to share my work but ultimately I need to make sure that I stand by the things I publish and posting them won't jeopardize my relationships or goals. To help with this I recommend always having someone you trust read over your pieces before you post them. My husband always reads my stuff before I post it because 1) I trust him and value his feedback 2) he is a great editor and I am not 3) he provides much needed perspective and 4) it is really helpful to talk about the implications of posting something with him before I hit "publish" – again, stigma is very really and it can have consequences. MN: This is great advice, Rachel. Thank you for taking part in this interview. I think that readers of Wordgathering will learn a lot from from your honesty and openness on a topic that so many are still afraid to discuss, particularly when it comes to their own personal experiences with it. RKW: Thanks so much Maya, I am really honored to be interviewed. Creating safe spaces for conversations about mental illness is vital. When it comes to encouraging people to ask for help and building their confidence so they challenge stigma and refuse limitations, having a supportive community makes all the difference in the world. I want to be as present as possible in this space because as a self-advocate and a doctoral candidate my purpose is to empower more authentic disability and mental health narratives and overall bring more visibility to disability.
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